Choosing to halt nourishment: an end-of-life decision

— A palliative-care specialist discusses his role with terminally ill patients who want to hasten death by not eating or drinking.

A hospice nurse provides palliative care to a man with Parkinson’s disease and cancer.

by Brian Donohue

It’s not only patient cases that inform clinicians’ expertise. Geriatrician David Gruenewald took a lesson from his mom, Mary, who at the time was a resolute, capable woman in her late 80’s. As Alzheimer’s encroached conspicuously into her life, she considered hastening her death so as not to burden her children.

“She saw this as a way of maintaining control over the end of her life,” Gruenewald recalled. “We had talked about that for decades, so it was no great surprise that she started talking about possibly ending her life.” The plan his mom considered was to stop eating and drinking.

Gruenewald, a UW Medicine specialist for older adult patients, is medical director of the Palliative Care and Hospice Service at VA Puget Sound Health Care System. Keenly aware of the growing tidal wave of people age 60 and over, he recently delivered a training presentation to dozens of clinicians. Its focus: how to talk with patients who are contemplating voluntarystopping of eating and drinking, “VSED” for short.

picture of David Gruenewald with his mother, Mary
Dr. David Gruenewald with his mom, Mary Matsuda Gruenewald, in 2017. She died in 2021.

As an option for people with decision-making capacity who want to manage their death, VSED has not drawn the same public scrutiny and controversy as medical aid in dying, in which a clinician provides drugs that a patient takes — a practice that’s legal in only 11 U.S. states.

“Workers in palliative care haven’t been much aware of VSED, even though very likely it has been going on for millennia,” said Gruenewald. He added that VSED is an important option for patients expressly because it does not require a doctor’s presence or participation.

“It represents personal autonomy and choice, and healthcare organizations like the American Nurses Association are publicly declaring that VSED is an acceptable, valid approach when palliative care fails to relieve end-of-life suffering,” he said.

When a patient is nearing the end of life or has a terminal condition, and expresses an interest in hastening death, palliative-care providers work to establish that the person has full decision-making capacity that’s not clouded by conditions such as depression or advanced dementia, and has suffering that cannot be adequately relieved by other interventions.

“The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED. In my mother’s case, the reasons for her suffering were key to every part of the conversation that happened after that,” Gruenewald said.

In his presentation, Gruenewald reflected on the experience of a male patient, 67, who had advanced cancer and could not tolerate more chemotherapy. The patient had been admitted to the hospital with pneumonia and voiced a wish to go home and die by self-inflicted gunshot.

“He did not see value in continuing to live and being unable to do the things that formerly gave his life meaning. In talking with him, it was very important that I understood his suffering — the physical, the emotional, interpersonal and spiritual reasons,” Gruenewald said. “And then to see if he was open to considering a less violent path, which turned out to be VSED.

picture of David Gruenewald
“The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED,” said palliative care specialist Dr. David Gruenewald.

“We were able to establish trust, and then to talk through that option and create a plan with supports. It wasn’t quite what he had envisioned, but it was acceptable to him.”

Research indicates that patients who pursue VSED are typically over age 80 and significantly burdened by disease, dependent on others for care, and face a short life expectancy.

Although VSED is not very painful, Gruenewald said he would not recommend it to relieve suffering from severe physical symptoms in the final days of life. The VSED process usually lasts one to two weeks and requires resolve to carry out. Pangs of hunger and thirst typically diminish within a couple of days; dry mouth can be managed with ice chips and over-the-counter products. But the patient will grow progressively weaker, and dehydration may bring agitation and delirium. Physical and emotional support from family members and friends can help get through this phase.

“The way you die has an effect on the people that you leave behind,” Gruenewald said. “And there is evidence that, for many people, VSED can be more peaceful than dying by medical-assisted dying.”

VSED’s lack of immediacy gives the patient time to reminisce over stories and to say goodbye to friends and family. This opens the process and can make it more harmonious for all, Gruenewald said. Another advantage: It gives the patient time to reconsider.

Mary Gruenewald lived another seven years after she initially broached VSED.

“She was in assisted living by then,” her son recalled. “For most of that time, it was at least acceptable, if not high, quality of life. And she was continuing to contribute meaningfully to friends and family in a way that other people really cherished. Those would have been years of life that she would have forgone.”

Complete Article HERE!

Notes From a Caregiver

— A husband tries to strike a balance between living in the present and contemplating the future as his wife’s Alzheimer’s disease progresses

David and Cheryl McNally

“I hate it! I hate it! I hate it!” The tears that flow down her cheeks I am powerless to stop. I hold her hand and respond in the way she has requested, not with words of encouragement but with the truth of her reality.

By David McNally

“Yes, darling, it’s bloody awful,” I say. What must it be like to be losing your mind, to be in a mental fog, desperately seeking to find your way through, only to discover the fog thickens?

My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating.

I keep this at the forefront of my own mind as my wife’s Alzheimer’s progresses, and I am pulled every which way with caregiving duties. Despite needing personal support, the one person who previously was my source of comfort is incapable of giving it to me. And I accept this reality. Her emotional pain is as much as she can handle. My resilience to stay the course must come from other sources.

Caregiving for a spouse with Alzheimer’s is the experience of watching the person you love gradually disappear. My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating. Not without a fight, mind you. It’s her inability to track a conversation, however, that is becoming too difficult. Her withdrawal is slow but evident.

Our journey is unique in that my wife is choosing to die on her own terms. We are now at the stage where she has put down a marker as to when this will happen — within the next year. Cheryl, my wife, will VSED (Voluntary Stop Eating and Drinking). There will be no memory care unit, no unnecessary suffering for her or her loved ones. When life holds no more joy, and nothing matters anymore, she will begin the process.

Suspension of ‘Normal’ Life

In so many ways, therefore, “normal” life is suspended for me. But then, what is normal at the age of 76? My role as a caregiver is not an aberration; there are millions meeting the needs of loved ones with debilitating, terminal illnesses. What racks one’s own emotions is witnessing the incremental progress of this disease, and the waiting. One is caught in the conundrum of not wanting your wife to suffer but not being ready to let her go.

There is also the guilt associated with looking to the future, a future beyond and without Cheryl. How can I think of such things! Yet wisdom tells me my thoughts are understandable. It is nature’s instinct for survival. Almost twenty years ago, my first wife died of ovarian cancer. I was 56 with potentially many years ahead of me. Now at 76, there are obviously fewer years, but what if there are ten or more? Giving up on life is anathema to me.

This attitude sustains me until it doesn’t. The confidence that I will be okay can be severed unexpectedly. Recently, while cleaning the kitchen, I asked “Alexa” to play Andrea Bocelli. As if to ensure I was fully aware of the grief to come, Bocelli began with, “Time to say goodbye.” I sobbed, as the enormous void soon to be in my life washed over me.

“Then again,” says my incredibly active mind, “who is to say you won’t go first. There is no evidence of illness, and you have a high sense of well-being, but don’t get ahead of yourself. Remember your own debilitating cancer treatment ten years ago. Yes, you were cured but another unpleasant surprise could be on its way.”

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Trying to Make Sense of Caregiving Experience

This is also not Pollyannish or being in denial, but an understanding of how joy and grief can co-exist. Ironically, Cheryl and I laugh a lot. I have the heritage of a British wit and she has a wonderful sense of humor. I don’t believe I have seen anything more beautiful than when her face lights up with a spontaneous smile. She is a magnificent audience of one. That is more than enough applause for me.

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Life is a mystery. That is my current conclusion from my time on this planet. How does one reconcile two wives with terminal illnesses? Railing at God serves no useful purpose. Well-meaning people utter a popular admonition: “God doesn’t give you anything you can’t handle.” My theology is God does not designate illness to one person and not another. That being said, I do believe that within each of us is a spirit that enables the transcendence of enormous difficulties.

Being a reflective person, I endeavor to make sense of this caregiving experience. Several years ago, I wrote a book called “Even Eagles Need a Push.“To quote from my own writing, I stated: “I have been down many paths looking for happiness. But nothing has made more sense and resulted in more contentment and fulfillment than this understanding — the purpose of life is to be a growing, contributing human being.”

There are certainly growth opportunities as a caregiver: patience, surrender, compassion in action, letting go, and acceptance, to name a few. Moreover, contributing to the safety and security of another is as purposeful as it gets. I have no answer to why life has led me to this place and no idea of what the future holds. I am willing, however, each day to step into that mystery.

Complete Article HERE!

A Son’s Decision to Help His Father Die

— Ben Griffith’s dad chose a method to end his life that was controversial — but protected by a Supreme Court ruling

John Griffith in 1989 cradling granddaughter Jordan.

By John Rosengren

1990: The right to refuse medical treatment

Ben Griffith rose before the sun the morning of March 18, 2022, packed his car and began the long drive from his house in Frankfort, Ky., to suburban Kansas City, Mo. The time had come to help his father die.

Months earlier, when John Griffith made clear to his three sons that he would end his life by denying himself food and drink rather than go into an assisted-living facility, his two older sons objected. Only Ben, the youngest at 67, agreed to keep vigil with his 99-year-old father. Now that John’s quality of life had deteriorated to the point where he would rather die than have his misery prolonged with unwanted treatment in assisted living, Ben was heading to his father’s house.

From their many conversations on the subject over the previous decade, Ben knew his father would have chosen the route of assisted suicide if it were legal in Missouri, as it is in 10 states and the District of Columbia. But it wasn’t. In September 2021, in a power-of-attorney directive, John had given his sons the authority, in the event that he was incapacitated, “to direct a health care provider to withhold or withdraw artificially supplied nutrition and hydration (including tube feeding of food and water).” Now, instead of assisted suicide, John had opted to voluntarily stop eating and drinking, a process known in right-to-die circles by the acronym VSED. The process generally takes between seven and 15 days. Because it can be painful, many who opt for it also seek palliative care through hospice services — which is what John Griffith did.

Seated at the kitchen table of his Frankfort home and surrounded by family photos, Ben recounts his father’s experience with life and death. (Ben participated fully in this article; his eldest brother, Tim, did not comment; his elder brother, Jon, offered this comment: “I just know that Ben did a great job representing the family and our experience of going through VSED with Dad. I don’t need to add anything more.”)

There’s a frost threatening that evening, so Ben and his wife, Patricia, have moved inside a dozen or so plants now safely perched along the kitchen counter. Ben, a piano tuner with short gray hair, is tall and lanky like his father, who was 6-foot-4. His words occasionally give way to emotion. His soft blue eyes, also like his father’s, are warm and kind.

John Griffith — born Dec. 12, 1922, in South Carolina, the son of a Methodist minister — was a man of such strong principles and resolve, he bordered on obstinate. Despite widespread public support for the United States’ involvement in World War II, Griffith at 19 opposed war “for any cause whatever” and refused to register for the draft, which he considered a “contradiction of Christian teachings, democratic liberty and individual freedom.” Instead, as he wrote in an essay for the book “A Few Small Candles: War Resisters of World War II Tell Their Stories,” he served 24 months in federal prison.

The influence of a Quaker attorney willing to defend him pro bono sparked John’s conversion to the Religious Society of Friends. After his release from prison, he attended William Penn College, a Quaker institution in Oskaloosa, Iowa, where he met and married Reva Standing. They raised four sons. Griffith spent his working career managing a farmers cooperative. When their oldest son, Chris, was murdered in 1986, Griffith stuck to his pacifist convictions and opposed the death penalty imposed on his son’s killer.

Reva suffered a stroke in 2003 and showed early signs of dementia in the hospital. Despite his belief that it was wrong to end another’s life in war or by capital punishment, John made the decision to honor her wishes and remove his wife of 56 years from life support in what he considered an act of compassion. “It was clear if she came home, there would be a loss of brain function,” Ben says. “He knew one of her biggest fears was living with dementia.”

Neither father nor son could bear watching a loved one suffer unnecessarily — a point driven home by the experience of Ben’s mother-in-law. In 2016, when Patricia’s 93-year-old mother began losing her sight, she moved into an assisted-living facility and eventually a nursing home after going completely blind. “She fell gradually into a shell,” Ben says. “Her existence was getting not very good.”

 

It was so painful for Ben to watch that he started searching online for ways he could end her life to put her out of her misery and not get arrested. But his father urged him not to do anything that would have negative consequences for his wife and their two adult children. Ben tears up at the telling. “I could have ended her life,” he says. “She suffered — but he said, ‘Don’t do it, Ben.’ ”

Her ordeal seemed to spark something in John. Already into his 90s by then, he began contemplating the end of his own life, which he discussed openly with his sons. Patricia’s mother’s situation “cemented the idea for him: If you go into assisted living, you lose a lot of choices,” Ben says. “If something happens, they call for help. You go to the hospital and they treat you. Same thing if you are in a nursing home. If you’re unresponsive, they are going to treat you.” John made it very clear that he did not want to go into assisted living or a nursing home.

A man as spiritual as he was stubborn, John had meditated daily for years, an hour or so at a time, an essential part of his religious faith and practice. He also swam a mile most every day at the local YMCA. At 90, he set eight state swimming records for nonagenarians on his daily swim, according to Ben. He had decided that once he could no longer swim, life would no longer be worth living and he would begin VSED. “He had identified the red line,” Ben says.

More from The Unwritten Rights Issue

John “had his last swim at 98,” Ben recalls. His “will to live” did continue, but he was losing physical strength. He was having trouble walking and would soon have to use a wheelchair. And he felt himself slipping cognitively. So that’s how he came to fill out his health-care directive in September 2021. With the help of Compassion & Choices, a nonprofit organization that advocates for access to aid in dying, he also filled out an advance directive addendum indicating his desire throughout various stages of dementia that others “keep me comfortable while stopping all treatments and withholding food and water so that I can die peacefully.”

That fall John discussed his VSED intentions with his primary care physician, who did not approve. The doctor tried to talk John out of the idea over the course of several visits. But John would not be dissuaded.

He informed his sons of his plans in a Zoom call. The two older sons protested. Tim, who had been his father’s primary caregiver, taking him to appointments and helping him at home, tried to persuade his father to move into assisted living instead, according to Ben. But their father refused. He would stay in the two-bedroom townhouse he and his wife had lived in for years and die by his own design. There was no talking him out of it. “If he was going to do something, he was going to do it,” Ben says.

From left: John Griffith celebrating his high school graduation in 1940; with wife Reva in a wedding photo from May 1947.

Though Tim and Jon would visit, they did not want to be accomplices to VSED; Ben alone agreed to be with their father continuously throughout the process. “I felt it was an act of love,” Ben says.

In January 2022, John developed a cough. The prescribed medication he took for it made him confused, even after he stopped taking it. He had trouble focusing during his meditation. He began to notice “a sharp decline, both in memory and in my ability to make decisions,” he wrote in a letter to family, friends, neighbors and his spiritual community. In February, he was diagnosed with dementia.

Physically, he was also failing fast. He could no longer stand on his own. He needed the help of home health-care attendants using a lift device to get from his bed to his wheelchair and back again. He was outfitted with a catheter. By late February, his quality of life had sunk to the point of no return. “It’s exhausting to get through every day,” he explained in his letter. “I’ve had a good life. I think the time for VSED is now.” In another Zoom call with his sons, he told them the same. He eventually set March 19 as the date to begin his life-ending fast.

Ben and his brothers hired a hospice service to provide palliative care. But the assigned chaplain, a Catholic priest, said he could not in good conscience minister to someone committed to dying by their own doing. Another chaplain, who was not Catholic, took his place.

“While I agree with the Court’s analysis today, and therefore join in its opinion, I would have preferred that we announce, clearly and promptly, that the federal courts have no business in this field. … This Court need not, and has no authority to, inject itself into every field of human activity where irrationality and oppression may theoretically occur, and if it tries to do so it will destroy itself.”— Justice Antonin Scalia, concurring, Cruzan v. Director, Missouri Department of Health

Others objected, too. Some covertly, some overtly. His next-door neighbor did not disagree with his decision explicitly, though she did come over to read the Bible with John. “She wanted to make sure he was right with Jesus,” Ben says. Once John began the VSED process, Ben says, she stopped visiting.

A key word in the 14th Amendment’s due process clause is “liberty,” a concept that runs deep in the American psyche. “We think of it in terms of: Each individual person controls their own body, especially if you’re an adult and competent,” explains Rob Gatter, a professor at Saint Louis University’s law school and director of its Center for Health Law Studies. “It’s the same reason motorcyclists get mad when states say you have to wear a helmet: … I’m a competent adult and I don’t need the state to be my parent. I make choices for myself understanding if I’m wrong I suffer the consequences. My body does not belong to the state. My body belongs to me.”

Ben arrived at his father’s townhouse in Gladstone, Mo., about 3 o’clock the afternoon of March 18, having driven the better part of 11 hours. He had braced himself for the ordeal, knowing it could become more difficult if his father wavered and requested food or water. Ben could not deny him that. “It’s voluntary,” Ben says. “If a person wants food or water, you give it to him. I had done my homework with Compassion & Choices and read their list of guidance. It says remind the person, ‘Dad, you know you’re doing VSED. If you take ice chips or water, it’s going to delay the process.’ I prepared before I left for that.”

Ben found his father in good spirits. “I am convinced that there is something more: that human consciousness is independent of the body and that the death of the body is not an ending of consciousness — it is rather a passing,” John had written a couple of weeks earlier. “Into what? I confess that I do not know, but I have a deep, abiding trust in the Divine Ground of all existence that the major world religions have variously called God, Mind, Allah, Tao, etc. My parting wish for my friends is that they nurture compassion and walk humbly in the presence of Unfathomable Mystery.”

In addition to the hospice staff coming and going and a home-health caretaker on duty 24/7 beginning March 19, there was a stream of visitors to John’s house the first several days. Neighbors, fellow Quakers and other friends stopped by to spend time with him. John made small jokes at times and laughed with them. Tim and his family also visited. Tuesday, March 22, John was happy to see his son Jon, who arrived from Vermont. He had energy to send some emails. He spent half an hour being interviewed over the phone by someone from Compassion & Choices, which tired him out. The hospice team gave him a bath. Several times a day, Ben gave him the medications prescribed by the hospice nurse — Haldol to ease anxiety and hydromorphone to soothe pain — by squirting them into his mouth with a syringe.

By Wednesday, the fifth day of his fast, John was weakening. It was more difficult for him to get in and out of his wheelchair, even with the power lift. The hospice nurse added lorazepam to John’s list of medications to help him relax. The next day, Thursday, he was talking less, and when he did speak, he didn’t make much sense. He insisted on getting out of bed at one point, then drove his wheelchair into the kitchen but did not seem to know what to do once he got there.

John Griffith on his 90th birthday in 2012, with sons, from left, Jon, Ben and Tim, holding Sammie the dog.

By Friday, March 25, John’s face had lost its color, and his eyes had dulled. One of the nurses tended to his feet and lower legs, which had swollen with fluid. Ben began to sense his father’s life would soon be over.

The process was difficult to watch. Some couldn’t. Matt, married to Tim’s daughter, found it too upsetting to interact with John when he visited. But Ben stayed the course. “I was trying to keep in the role of making sure it happened,” Ben says. “I was the protector of the process.”

At one point during the week, someone informed Ben that a caregiver was swabbing his father’s mouth with a sponge soaked in juice — despite being given clear instructions that they were not to give him any food or liquid. Ben had to go into his father’s bedroom and stop her. “It’s really hard for some people to hear that someone isn’t going to eat or drink anything until they die,” he says.

So hard that others want to intervene. But the law is clear. “A physician who treats a patient against their will — even to save their lives — would be guilty of battery,” Gatter says.

Ben worries the Supreme Court’s recent ruling overturning the right to abortion could cloud the right to refuse treatment. “How can you tell a person you cannot make your own decision?” he says. “It’s their legal right. Who’s going to take that away?”

By Saturday, March 26, eight days into his fast, it was clear John had neared the end. He lay on his side in the fetal position, clutching the rails of his hospital bed and moaning. Ben had been sleeping at his brother Tim’s house, a 15-minute drive away, but he decided to spend that night at his father’s townhouse.

A little after 1 a.m. on the 27th, the nighttime caregiver woke Ben and told him death was at hand. Ben found his father still in the fetal position, breathing very slowly. He laid his hand on his father’s shoulder and leaned over him so that his lips nearly brushed his father’s ear. “It’s okay,” he said. “Let your body go. We love you.” And within a few minutes, John Griffith was gone.

Complete Article HERE!

I went from being a labor-and-delivery nurse to a death doula.

I help people who want to die on their own terms by refusing food and water.

People who voluntarily stop eating and drinking tend to be terminally ill people whose doctors can’t predict how long they have left to live.

By

  • Nancy Simmers is a death doula whose clients decide to end their lives by refusing food and drink.
  • A former labor-and-delivery nurse, Simmers says the process of death is similar to birth.
  • This is Simmers’ story, as told to Jane Ridley.

This as-told-to essay is based on a conversation with Nancy Simmers. It has been edited for length and clarity.

Most people are taken aback when they hear that I’m a death doula. They’re shocked when I say that I work exclusively with people who want to die on their own terms, by voluntarily stopping eating and drinking.

The method, known as VSED, might seem terrible at first. But it lets you take control of the circumstances of your death.

Most people support the idea of the power of the individual. They understand someone who says, “It’s my life, let me get on with it.” But they feel uncomfortable when someone says the same thing about their death.

I used to be a labor-and-delivery nurse. Over the years, I’ve come to see death and birth as physical, emotional, and spiritual thresholds. They are similar processes. They involve uncertainty, fear of the unknown, and transformation. Both require courage, surrender, release, compassion, and support from others.

Some people reach a point in their life and decide they’re done

The US law largely doesn’t prevent people from choosing to end their life by VSED, which doesn’t require permission from a physician.

Many people who opt for VSED have a terminal illness. But it’s almost impossible to get a firm prognosis for neurological diseases such as ALS and Parkinson’s. People can suffer for years as their bodies and mental capacities deteriorate. Some people reach a certain point and say, “I’m done.” A person in their 90s who has lost their vision, hearing, and bladder control may feel that their quality of life is nil.

A headshot of death doula Nancy Simmers
Nancy Simmers, a death doula, helps people who opt to stop eating and drinking, a method of death known as VSED.

If a doctor won’t certify that you have less than six months to live, you are not eligible for “death with dignity.” The laws — which apply in eight states and Washington, DC — allow people to take lethal drugs under medical supervision.

VSED is another version of death with dignity. Each VSED death I’ve attended has been different, but not undignified. Most of my clients die in their own homes surrounded by their loved ones. It’s a gift. It wasn’t VSED, but when my father was dying of cancer in 1991, my sons — 8 and 5 — were in and out of their grandpa’s room. It doesn’t do anybody any favors to be frightened of death.

VSED requires a lot of planning

A lot of people know nothing — or very little —about VSED. There are some scary myths. People think that it involves great suffering and that it goes on indefinitely. They assume it will affect your life-insurance policy.

VSED is not to be considered lightly. It needs lots of careful planning. It’s reversible up to a point, and there are medications to ease the transition. Family members usually know about the decision and agree that it’s the choice of the individual concerned. Life insurance is mostly straightforward because the doctor does not write “suicide” as the cause of death; they note the person’s underlying condition, such as cancer.

An altar full of photos that pays tribute to the person dying
Simmers set up an altar to celebrate the life of a woman who chose VSED.

People considering VSED in my home county of Whatcom, Washington, find me via word of mouth or online. I’ll arrange to meet with them and their family. My partner, Andrea Fenwick, and I give frank and honest answers. There’s no sugarcoating. We’re part of the nonprofit VSED Resources Northwest, though we advise people across the world.

We can understand why families question their loved one’s decisions. It depends on the case, but we might tell them: “This is your beloved person, and your beloved person is suffering. It’s their body and their choice.”

We’ll tell the family, “Although you will suffer because you’ll miss this person, it’s their choice to end their suffering — how can you be supportive of this choice?”

Once things are decided, we mark the start date with a little ceremony. We celebrate the person and their life and their choice. We thank them and shower them with love and gratitude.

Many families make a small altar. It’s the focal point of their room. They’ll decorate it with family photos and precious items that remind the loved one and their visitors about their interests and skills. It’s a reflection of a life well lived.

I like to light a candle, symbolizing the person as a spirit. After the death, it becomes part of a leave-taking ceremony and is blown out.

VSED is a serious commitment, but it doesn’t have to be a solemn affair. My last client lightened things up with a touch of humor. We’d ask how she was feeling during her first few days of VSED — she joked about wanting a cold Pepsi.

I tell my folks that dying has been around for millions of years. Your body knows what to do. Just trust your body. Our bodies know how to breathe. Our bodies know how to process food. Our bodies know how to birth. They know how to die.

It can be hard for families to watch as their loved one becomes confused because of dehydration

VSED takes an average of nine to 11 days. The person is usually up and about for the first few days. But the middle stage, which can last almost a week, is the marathon.

They’ll need medication — a mixture of morphine and anxiety drugs — to help them through the confusion and delirium caused by dehydration. It’s hard for the family to watch. A designated person will step in if the loved one calls for food or water.

The final stage lasts about three days. Dehydration makes people sleepy. It’s reassuring for everyone because you lose consciousness when your body goes into crisis mode.

The lack of fluids affects your kidneys and liver. The excess bilirubin makes the skin look yellow. The feet and the fingertips turn blue. Breathing becomes shallow or agonal.

Friends and relatives gather at the bedside to say goodbye. It reminds me of families coming together to welcome a newborn. We want the very best for the baby; we support them when their journey in life begins. People deserve the same support when the journey ends.

Complete Article HERE!

I have a terminal illness and I’m fighting my health-insurance company to let me die on my own terms

Shava Nerad told Insider that her son, Joseph, would look after her dog, Wilson, after she took her own life.

By

  • Shava Nerad has a terminal illness and intends to end her life by refusing food and water.
  • Her health-insurance company has denied the services she needs to carry out her plans.
  • This is Nerad’s story, as told to Jane Ridley.

This as-told-to essay is based on a conversation with Shava Nerad. It has been edited for length and clarity

I once talked a good friend out of suicide.

We were both in our 20s and I asked, “If you could do anything in your life, what would you do?” He said he’d be a roadie and learn to do the lighting for bands. So I told him, “Quit your job, get rid of everything, and go try that.” Then I said, “You can always kill yourself later.”

He took my advice. He became a lighting director for some of the biggest musicians of the 1980s and ’90s.

Now, four decades after that conversation, and at 63, I’m the one who wants to end my life. I’m not pro-suicide, but I am against the idea of a meaningless life — something that I see in my future. If I was handed millions of dollars, it wouldn’t give me back my health. If you can’t do what you love and you are suffering pain all day and every day, maybe it’s time to go.

I need clearance from my health-insurance company before I can properly end my life

But it’s not as simple as that. I am not going to hang myself — it sounds awful. All I want is to go out on my own terms while I can still say goodbye. The best way for me to die is by voluntarily stopping eating and drinking, or VSED.

I believe it’s the most compassionate method of suicide — both for yourself and your family. It’s not painful — you’re hardly even aware toward the end  — and your loved ones can be at your bedside if they wish. But before I go ahead with VSED, I have to rip up the red tape and change my advance directive. My health insurance won’t pay for the geriatric psych evaluation that I need to prove that I’m of “sound mind.”  If I don’t get the clearance, I can forget about receiving any form of hospice care.

inflammation and narrowing of the blood vessels. My rheumatologist — who told me that it was a progressive illness that could cause organ damage — said that it was potentially fatal. She said that Behcet’s made a stroke worse.

I had raging headaches and excruciating pain in my joints. It felt like the inside of my body was covered with hives. I was forced to leave my job as the director of a nonprofit software project. I used a walker because of my mobility impairments.

I think that my pain threshold is impacted by barometric pressure. I felt the best I had for years on a trip to South Africa in 2019. My symptoms seemed to ease in warm, dry weather. I moved from Boston to Fremont, California, the same year. The change of location helped — for a while. But if a doctor asked how I was feeling today, I’d say, “really, really, really terrible.”

Behcet’s tends to exacerbate any old or new injury. Right now, the inflammation is in my left hip. I’ll feel it in my shoulder, back, internal organs, and even my feet. I’m taking medication for diabetes and thyroid issues. I’ve tried vitamin D and herbal supplements.  Nothing’s done a really great job. CBD eases the pain — or allows me to better ignore the pain.

I got COVID in January this year. I had even more pain and fatigue. A lasting effect was double vision, so I can no longer drive. The eye strain has restricted my reading and writing. I’m a retired journalist, so that’s particularly distressing. I sleep 18 hours a day. I only leave my house for medical appointments. 

I don’t want to die a long, torturous death like my mother did

I decided to end my life last month. My 29-year-old son, Joseph, supports me. He knows I’ve been ill for 15 years, and I’m in decline. I knew that I was not eligible for any of the Death with Dignity laws. It was highly unlikely that a doctor would say I’ve got six months to live. Behcet’s is a slow, progressive disease. It could kill me by January next year — or when I’m in my 90s.

My mother died a prolonged and torturous death from Lewy body dementia — the same thing Robin Williams had — at the age of 94.  She got squeamish thinking about death. 

The only legal option I have available is VSED. The Supreme Court ruled that any person has the right to refuse treatment, including refusing hydration and nutrition. At the point that I stop eating and drinking, I can’t get medication to help me die, only medication to make me less distressed.

advocacy groups for VSED. They’ve told me to change my advance directive once I’ve been certified as being “in sound mind” — with no depression or dementia — by an experienced geriatric psychiatrist.

I don’t need the certification to move forward with VSED, but it’s an important measure. The advocates said that my decision would be much less likely to be contested if I got the legal documentation. The wishes of some VSED patients, they said, had not been honored.

But Kaiser Permanente, my HMO, has refused to pay for the psych evaluation. I said that I needed the referral to pursue VSED and receive hospice care. They have not been transparent about their denial. 

If I have to pay out of pocket, it will cost tens of thousands of dollars that I don’t have. I’m a senior on a fixed income. 

I feel that it’s time for me to go

It takes a great deal of strength to talk about options like VSED. We’re running into a lot of social taboos. It’s a product of how incredibly good modern medicine is — it’s hard for people to die. We’re so focused on prolonging life, we don’t talk about the quality of life.

I’d rather die at home with hospice care rather than in an institution. People I haven’t seen in years have come to visit. They’re happy to have the opportunity to say goodbye, which is how it should be. I have a dark sense of humor and say that we should light a few candles on my “unbirthday cake.”

I’ve led a good life and packed in a lot. I look back at Joseph’s birth and the first few hours that I held him. When I was to marry his dad, I made my own wedding gown. I loved dancing and climbing the mountains where I grew up in Vermont.

I want my death to be as gentle as possible, for everyone involved. I want to be as brave and determined and loving in death as I have been in life.

Complete Article HERE!

Understanding End-of-Life Options

— New Book Details Voluntarily Stopping Eating and Drinking

When supported by knowledgeable providers, the process can be peaceful and meaningful.

By Kelly Webster

Quality of life can diminish considerably for people living with incurable or terminal diseases. They have thoughts and questions about what the end of their life will look like. They may wonder about their condition deteriorating, losing their dignity and autonomy, and being a burden on their family members. They also worry about suffering. Sometimes, discussion turns to potentially hastening the end of their lives.

In a new book titled “Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death,” University of Rochester Medical Center professor emeritus Tim Quill, M.D. provides realistic descriptions of what happens to a person when they consider and potentially choose VSED (voluntarily stopping eating and drinking). He addresses misconceptions of this poorly understood practice, which can cause people to inaccurately picture uncomfortable starvation and unrelieved suffering. The truth is that when undergoing VSED supported by knowledgeable and caring physicians, the process can be peaceful and meaningful.

“I have been engaged in research and discussions around medically assisted dying for many years. In New York State, physician-assisted death is not legal, but many terminally ill patients want and need help figuring out what their end-of-life options are,” said Quill. “VSED has been a legally available option in the background for some time now, but most people don’t know about it or fully understand it. We wrote this book to help physicians, patients, and families learn about the process from a clinical, legal, and ethical perspective.”

A Sense of Grief and Relief

Chapters from the book include several real patient stories including a contribution from Robert Horowitz, M.D., URMC division chief of Palliative Care. As a physician, Horowitz has extensive knowledge of end-of-life situations, including patients who have chosen VSED. However, he gained a unique perspective when his own mother who was facing a progressive illness wanted to discuss her future options.

At that point, she was in the early stages and had the capacity to make decisions, but she feared what would happen to her as the disease progressed. The last thing she wanted was to spend the rest of her days dependent, frail and lost in a nursing home. Now facing the situation as her son rather than her physician, Horowitz and his family held many powerful conversations with his mom and her physician. They ultimately agreed that when his mom decided the time was right—that living with additional losses incurred by disease progression was untenable to her—they would support her choice to die by VSED.

The term “grief and relief” appears many times throughout the chapters, because end-of-life can be distressing for both patients and families, but the assurance that a loved one will not suffer a worse fate is a blessing. Horowitz’s contribution to the book details his, his mother’s, and their family’s experience in a way that humanizes this medically and emotionally complicated situation.

Empathy is Key for Discussion

Both physicians and patients are often hesitant to bring up end-of-life planning because it is difficult to talk about, and because of legal and ethical concerns.

This book approaches the topic with a deep sense of empathy for all involved. When a patient and family begin to consider the road ahead, it’s important that they understand all options available, and receive comprehensive information to help them make fully informed decisions.

For a patient worried about their condition dragging on for months or even years, the desire to bring their lives to a meaningful end can bring closure for themselves and their families. The process of VSED usually takes approximately ten days to two weeks from initiation to death, provided the patient strictly adheres to the process. This gives the patient and family a very meaningful but finite period of time to come together, make final plans, and say farewell. For families and loved ones, the patient finally finding a peaceful escape can be a blessing.

The key for any end-of-life situation is open communication. This book can be a tool for opening up the conversation between family members, and/or for a patient to start a discussion with his or her physician. Without doubt, these conversations can be difficult. However, they can be made easier with the knowledge and compassion offered in this book.

Quill is world renowned for his progressive discussions around palliative care and end-of-life situations. In addition to his clinical role at URMC, he is also a board member of the Death with Dignity National Center in Portland, Oregon. In 2013, Quill was included on a list of “Hospice and Palliative Medicine Visionaries” by the American Academy of Hospice and Palliative Medicine.

Complete Article HERE!

A terminally ill Hopkins woman shares her plans to die with dignity

Voluntarily stopping eating and drinking (VSED) will allow a woman with Alzheimer’s to die on her own terms.

Cheryl Harms Hauser with her husband, David McNally, at their home in Hopkins.

By Kevyn Burger

Warm and lively, Cheryl Harms Hauser relished her hostess duties when a visitor arrived at her Hopkins home, telling the back stories of the art hanging on the walls, selecting the perfect color of mug for coffee.

Despite her outgoing personality and fashionable appearance, Hauser, 75, did not dress herself. She can’t dial a phone, set a table or follow the plot line in a television series.

Two years ago she was diagnosed as having Alzheimer’s disease. Now this wife, mother and grandmother is planning a way to die before dementia claims her.

Hauser has decided that at an as yet unnamed date, she will hasten her death through a process called VSED: she will voluntarily stop eating and drinking.

“When the day comes when nothing matters anymore, I’ll begin,” she said. “My brother died of this disease and it was torture. I don’t want that for me and my family.”

In the past few years, VSED has emerged as a possible course of action for people diagnosed with terminal illnesses or progressive diseases. In the face of great suffering or a long, irreversible deterioration, the people who choose VSED refuse to swallow food or sip liquids. It typically takes 10 days to two weeks for them to die.

“Some people want to go out fighting to the end, but that’s not for everyone,” said Dr. Timothy Quill, a Rochester, N.Y., palliative care physician who has provided medical support to VSED patients. Quill also co-authored “Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death,” which was published earlier this year.

“Of what I call the ‘last resort’ options, VSED is the most available and least well described,” he said. “It appeals to people on the sicker end of the spectrum. They’re prepared for the end of their life and want to speed things up. It’s not dissimilar to someone who chooses to end life-sustaining treatments.”

Humans have informally chosen VSED for centuries. But carrying it out today is no simple act. People opting for this method need a doctor’s supervision that includes medication, symptom management and hospice care, Quill said.

They also need family support.

“They need a partner with some sophistication who is willing to go through this process with them,” Quill said. “They need to share the same values and have many conversations to make sure everyone is on the same page.”

For Hauser, that partner is her husband, David McNally.

Friends introduced the pair in 2007. A mother of three, Hauser was thrice divorced and McNally was a widower whose first wife and the mother of his five children had died of ovarian cancer.

“We crawled into love,” Hauser said, smiling at her husband. “With my track record, I resisted for a long time before I succumbed.”

Four years into their relationship, Hauser was by McNally’s side as he faced a debilitating form of throat cancer. His radiation treatments left him thin, weakened and dependent on a feeding tube for a time.

“We didn’t need to get married, but when we bought this house together [in 2016], I turned a corner. Something bubbled up,” McNally said. “I told Cheryl, ‘I wouldn’t mind being married. Actually, I would love it.'”

But within a few years of exchanging their vows, they both noticed changes in Hauser’s behavior and memory. That led to her being diagnosed with the fatal disease.

“Cheryl’s level of self-awareness is high. She observes things and can talk about them because she is not in denial or frightened. This side of her brain is dying,” said McNally, touching his wife’s styled hair. “We have seen the MRIs.”

A leadership consultant, speaker and author of five bestselling business books, McNally has put his career on hold while he assumes duties as his wife’s full-time caregiver.

Because Hauser is no longer comfortable being alone, her daughter Wendy Longacre Brown creates a weekly Google calendar and shares it with her sister and a few of Hauser’s friends so they can sign up to be on duty when McNally needs a break.

“My mom prides herself on being dignified,” Brown said. “She’s the person who always showed up with lipstick, sent the handwritten cards. She’s losing the values she’s held closely, the ones that identify who she is. She’s begun mourning that person and I mourn with her.”

Brown is a trained and certified death doula whose work focuses on providing emotional and spiritual support, rather than medical care, for the dying and their families. She’s now using her knowledge to help her mother with end-of-life decisions.

“Mom has tremendous courage and clarity. She’s decided she doesn’t want her life to end in a nursing home, unable to recognize her loved ones or herself in the mirror,” said Brown. “I’m so proud of her. She gets up every day to live the best life she can.”

A good death

Brown became familiar with VSED through the influential book “Choosing to Die” by Phyllis Shacter, which she shared with her mother.

“That got the conversation started,” Brown said. “We talked and talked and Mom said right away, ‘I think this is for me.'”

Part memoir, part how-to manual, it tells how Shacter helped Alan, her husband of 26 years, carry out his wish to use VSED to hasten his death.

“That was in 2011. We had no guidance at the time on how to do this,” she said. “We were the guinea pigs, the forerunners. When we heard about it, it sounded horrible. After we investigated, it didn’t.”

Like Hauser, Alan was diagnosed with Alzheimer’s. When he was in the early stages of the disease, he signed a health care directive and authorized his wife to carry out his wishes.

“We understood what lay ahead,” she said. “Alan had to stop eating and drinking while he was still mentally competent. One day he told me, ‘I’m ready. It’s time.'”

To start the process, Alan consumed only 500 calories a day for five days. He said his goodbyes to his daughter and friends, then he settled into his bed and soon was mostly sleeping.

“We played music, I massaged him. He wasn’t hungry, but he was thirsty and I sprayed mist into his mouth,” she said. “On the last day he was comatose, but when I said, ‘Blink your eyes if you are comfortable,’ he did. He had taken care of his business and I knew he was all right.”

Shacter relied on medical supervision. In the nine days that it took Alan to die, he received ongoing care and medication from hospice caregivers and a physician.

“These are not suicides, but rather elective deaths,” she said. “We made a conscious decision to go outside the natural order to bring death on.”

A little known option

Quill explained that hunger quickly diminishes in VSED patients, but they remain thirsty, which is treated with oral swabs, mists or swishing and spitting. Once they become dehydrated, their blood pressure drops, resulting in organ failure. That’s when medical and hospice providers begin administering stronger painkillers. Most patients experience agitation, delirium and/or hallucinations in the 24 hours before death and are sedated with anti-anxiety drugs and tranquilizers.

By the time death nears, patients have fallen into unconsciousness. Then they stop breathing and their heart stops.

“There’s no suffering in the last hours. They appear to be sleeping,” said Quill. “If you view death as part of the life cycle, which is how I see it, it’s a quiet process.”

Thaddeus Pope, a professor at Mitchell Hamline School of Law who has spent 20 years writing and teaching about end-of-life precedents,contributed the legal perspectives of VSED as co-editor of Quill’s book. He said the topic often remains taboo among both medical practitioners and individuals at the end of life.

“This is a legitimate option for those in late stage disease, but it’s not on the menu,” Pope said.”It’s almost invisible, underground. You have to know to ask for it. People don’t know how to talk to their doctor about VSED.”

Leading the ship

Hauser has signed an advance care directive, which has an attachment that spells out her desire to use VSED to hasten her death. It asks for the process to begin when, among other things, “I lose my ability to have logical conversations,” and “When I get lost in familiar locations.”

The document also asks that she receive her care at home with no life-prolonging procedures so that she can die with “dignity and grace.”

In March of 2020, Brown shot a video of her mother stating her wishes. Brown plans to record another video when the time to execute the VSED plan begins “so if there is an authority who questions whose idea this was, the source will be in front of them,” Brown said.

Brown talks to her mother and stepfather every day and visits frequently to track the small cues that mark the progression of the disease in her mother.

“My job is to support my mom and her wishes and to know when she is still able to make the decision on her own so we can fulfill that wish,” she said.

Harms said she wants to spend her final days in the den of the home she shares with McNally. She’s also specified the songs she wants playing and the people she hopes will stop by. But she understands that there’s always an out.

“If, three days in, she says, ‘This is too scary. I want a meal,’ we will remind her of her words and show her the video. But if she decides she’s not willing to do it anymore, we will honor that, no question,” Brown said. “It will be a big surprise to me if she says stop. No one is leading this ship but my mom.”

Finding joy

For now, Hauser and McNally remain socially active. Hauser regularly attends her grandchildren’s sporting events (although she sometimes needs to be reminded about which team to root for).

In the past year, she has taken up a new pastime — and earned a nickname.She dances to music while painting, dabbing and dashing acrylic paint onto canvases to create one-of-a-kind colorful abstracts. McNally calls her Picassorina.

She’s asked that her paintings be offered for sale at the reception that will follow her memorial service, and that the proceeds go to an as yet unnamed end-of-life nonprofit.

“I’ve always loved art and creating like this is very therapeutic. It makes me feel good,” Hauser said. “My mantra is, I will not do anything that doesn’t bring me joy.”

Hauser and McNally have been transparent with their family and friends about their decisions and consider sharing their part of Hauser’s final mission — and her legacy.

“We talk openly about VSED and we want to encourage people to have these conversations about death and how they want to die,” she said. “I have had time to get to acceptance and I want to share my journey. This is what I have to give.”

Complete Article HERE!